69 research outputs found

    Respite care and short breaks for young adults aged 18–40 with complex health-care needs: mixed-methods systematic review and conceptual framework development

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    BackgroundThe number of young adults with complex health-care needs due to life-limiting conditions/complex physical disability has risen significantly over the last 15 years, as more children now survive into adulthood. The transition from children to adult services may disrupt provision of essential respite/short break care for this vulnerable population, but the impact on young adults, families and providers is unclear.AimTo review the evidence on respite care provision for young adults (aged 18–40 years) with complex health-care needs, provide an evidence gap analysis and develop a conceptual framework for respite care.DesignA two-stage mixed-methods systematic review, including a knowledge map of respite care and an evidence review of policy, effectiveness, cost-effectiveness and experience.Data sourcesElectronic databases and grey/unpublished literature were searched from 2002 to September 2019. The databases searched included Cumulative Index to Nursing and Allied Health Literature, MEDLINE, EMBASE, PsycINFO, Applied Social Sciences Index and Abstracts, Health Management Information Consortium, PROSPERO, Turning Research into Practice, COnNECT+, British Nursing Index, Web of Science, Social Care Online, the National Institute for Health Research Journals Library, Cochrane Effective Practice and Organisation of Care specialist register, databases on The Cochrane Library and international clinical trials registers. Additional sources were searched using the CLUSTER (Citations, Lead authors, Unpublished materials, Scholar search, Theories, Early examples, Related projects) approach and an international ‘call for evidence’.Methods and analysisMultiple independent reviewers used the SPICE (Setting, Perspective, Intervention/phenomenon of interest, Comparison, Evaluation) framework to select and extract evidence for each stage, verified by a third reviewer. Study/source characteristics and outcomes were extracted. Study quality was assessed using relevant tools. Qualitative evidence was synthesised using a framework approach and UK policy was synthesised using documentary content analysis. GRADE-CERQual (Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative Research) was used to assess confidence in the evidence. Logic models developed for each type of respite care constituted the conceptual framework.ResultsWe identified 69 sources (78 records) from 126,267 records. The knowledge map comprised the following types of respite care: residential, home based, day care, community, leisure/social provision, funded holidays and emergency. Seven policy intentions included early transition planning and prioritising respite care according to need. No evidence was found on effectiveness and cost-effectiveness. Qualitative evidence focused largely on residential respite care. Facilitators of accessible/acceptable services included trusted and valued relationships, independence and empowerment of young adults, peer social interaction, developmental/age-appropriate services and high standards of care. Barriers included transition to adult services, paperwork, referral/provision delay and travelling distance. Young adults from black, Asian and minority ethnic populations were under-represented. Poor transition, such as loss of or inappropriate services, was contrary to statutory expectations. Potential harms included stress and anxiety related to safe care, frustration and distress arising from unmet needs, parental exhaustion, and a lack of opportunities to socialise and develop independence.LimitationsNo quantitative or mixed-methods evidence was found on effectiveness or cost-effectiveness of respite care. There was limited evidence on planned and emergency respite care except residential.ConclusionsPolicy intentions are more comprehensively met for young people aged Future workResearch to quantify the effectiveness and cost-effectiveness of respite care to support service development and commissioning. Development of a core set of outcomes measures to support future collation of evidence.Study registrationThis study is registered as PROSPERO CRD42018088780.FundingThis project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 6. See the NIHR Journals Library website for further project information

    The specification, acceptability and effectiveness of respite care and short breaks for young adults with complex healthcare needs: protocol for a mixed-methods systematic review

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    IntroductionThe number of young adults with complex healthcare needs due to life-limiting conditions/complex physical disability has risen significantly as children with complex conditions survive into adulthood. Respite care and short breaks are an essential service, however, needs often go unmet after the transition to adult services, leading to a significant impact on the life expectancy and quality of life for this population. We aim to identify, appraise and synthesise relevant evidence to explore respite care and short breaks provision for this population, and to develop a conceptual framework for understanding service models.Methods and analysisA mixed-methods systematic review conducted in two stages: (1) knowledge map and (2) evidence review. We will comprehensively search multiple electronic databases; use the Citations, Lead authors, Unpublished materials, Google Scholar, Theories, Early examples, and Related projects (CLUSTER) approach, search relevant websites and circulate a ‘call for evidence’. Using the setting, perspective, intervention/phenomenon of interest, comparison and evaluation framework, two reviewers will independently select evidence for inclusion into a knowledge map and subsequent evidence review, extract data relating to study and population characteristics, methods and outcomes; and assess the quality of evidence. A third reviewer will arbitrate where necessary.Evidence will be synthesised using the following approaches: quantitative (narratively/conducting meta-analyses where appropriate); qualitative (framework approach); policy and guidelines (documentary analysis informed approach). An overall, integrated synthesis will be created using a modified framework approach. We will use Grading of Recommendations Assessment, Development and Evaluation (GRADE)/GRADE-Confidence in the Evidence from Reviews of Qualitative Research to assess the strength and confidence of the synthesised evidence. Throughout, we will develop a conceptual framework to articulate how service models work in relation to context and setting.Ethics and disseminationEthical approval is not required as this is a systematic review. We will present our work in academic journals, at appropriate conferences; we will disseminate findings across networks using a range of media. Steering and advisory groups were established to ensure findings are shared widely and in accessible formats.PROSPERO registration numberCRD42018088780

    Predictive Models of Assistance Dog Training Outcomes Using the Canine Behavioral Assessment and Research Questionnaire and a Standardized Temperament Evaluation

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    Assistance dogs can greatly improve the lives of people with disabilities. However, a large proportion of dogs bred and trained for this purpose are deemed unable to successfully fulfill the behavioral demands of this role. Often, this determination is not finalized until weeks or even months into training, when the dog is close to 2 years old. Thus, there is an urgent need to develop objective selection protocols that can identify dogs most and least likely to succeed, from early in the training process. We assessed the predictive validity of two candidate measures employed by Canine Companions for Independence (CCI), a national assistance dog organization headquartered in Santa Rosa, CA. For more than a decade, CCI has collected data on their population using the Canine Behavioral Assessment and Research Questionnaire (C-BARQ) and a standardized temperament assessment known internally as the In-For-Training (IFT) test, which is conducted at the beginning of professional training. Data from both measures were divided into independent training and test datasets, with the training data used for variable selection and cross-validation. We developed three predictive models in which we predicted success or release from the training program using C-BARQ scores (N = 3,569), IFT scores (N = 5,967), and a combination of scores from both instruments (N = 2,990). All three final models performed significantly better than the null expectation when applied to the test data, with overall accuracies ranging from 64 to 68%. Model predictions were most accurate for dogs predicted to have the lowest probability of success (ranging from 85 to 92% accurate for dogs in the lowest 10% of predicted probabilities), and moderately accurate for identifying the dogs most likely to succeed (ranging from 62 to 72% for dogs in the top 10% of predicted probabilities). Combining C-BARQ and IFT predictors into a single model did not improve overall accuracy, although it did improve accuracy for dogs in the lowest 20% of predicted probabilities. Our results suggest that both types of assessments have the potential to be used as powerful screening tools, thereby allowing more efficient allocation of resources in assistance dog selection and training

    Delivery, dose, outcomes and resource use of stroke therapy: the SSNAPIEST observational study

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    BackgroundTherapy is key to effective stroke care, but many patients receive little.ObjectivesTo understand how stroke therapy is delivered in England, Wales and Northern Ireland, and which factors are associated with dose, outcome and resource use.DesignSecondary analysis of the Sentinel Stroke National Audit Programme, using standard descriptive statistics and multilevel mixed-effects regression models, while adjusting for all known and measured confounders.SettingStroke services in England, Wales and Northern Ireland.ParticipantsA total of 94,905 adults admitted with stroke, who remained an inpatient for > 72 hours.ResultsRoutes through stroke services were highly varied (> 800), but four common stroke pathways emerged. Seven distinct impairment-based patient subgroups were characterised. The average amount of therapy was very low. Modifiable factors associated with the average amount of inpatient therapy were type of stroke team, timely therapy assessments, staffing levels and model of therapy provision. More (of any type of) therapy was associated with shorter length of stay, less resource use and lower mortality. More occupational therapy, speech therapy and psychology were also associated with less disability and institutionalisation. Large amounts of physiotherapy were associated with greater disability and institutionalisation.LimitationsUse of observational data does not infer causation. All efforts were made to adjust for all known and measured confounding factors but some may remain. We categorised participants using the National Institutes of Health Stroke Scale, which measures a limited number of impairments relatively crudely, so mild or rare impairments may have been missed.ConclusionsStroke patients receive very little therapy. Modifiable organisational factors associated with greater amounts of therapy were identified, and positive associations between amount of therapy and outcome were confirmed. The reason for the unexpected associations between large amounts of physiotherapy, disability and institutionalisation is unknown. Prospective work is urgently needed to investigate further. Future work needs to investigate (1) prospectively, the association between physiotherapy and outcome; (2) the optimal amount of therapy to provide for different patient groups; (3) the most effective way of organising stroke therapy/rehabilitation services, including service configuration, staffing levels and working hours; and (4) how to reduce unexplained variation in resource use.FundingThis project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 17. See the NIHR Journals Library website for further project information

    How do patients pass through stroke services? Identifying stroke care pathways using national audit data.

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    OBJECTIVE: To map and describe how patients pass through stroke services. METHODS: Data from 94,905 stroke patients (July 2013-July 2015) who were still inpatients 72 hours after hospital admission were extracted from a national stroke register and were used to identify the routes patients took through hospital and community stroke services. We sought to categorize these routes through iterative consultations with clinical experts and to describe patient characteristics, therapy provision, outcomes and costs within each category. RESULTS: We identified 874 routes defined by the type of admitting stroke team and subsequent transfer history. We consolidated these into nine distinct routes and further summarized these into three overlapping 'pathways' that accounted for 99% of the patients. These were direct discharge (44%), community rehabilitation (47%) and inpatient transfer (19%) with 12% of the patients receiving both inpatient transfer and community rehabilitation. Patients with the mildest and most severe strokes were more likely to follow the direct discharge pathway. Those perceived to need most therapy were more likely to follow the inpatient transfer pathway. Costs were lowest and mortality was highest for patients on the direct discharge pathway. Outcomes were best for patients on the community rehabilitation pathway and costs were highest where patients underwent inpatient transfers. CONCLUSION: Three overarching stroke care pathways were identified which differ according to patient characteristics, therapy needs and outcomes. This pathway mapping provides a benchmark to develop and plan clinical services, and for future research

    Improving interprofessional practice and cultural competence with interprofessional education

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    Challenge/Issue: Interprofessional education (IPE) and cultural competence (CC) training have become a staple in healthcare education programs with the ultimate goal of improving patient care. IPE, where students from two or more professions learn from, about, and with each other to optimize care, resulting in great team building, sharing of knowledge, communication, and collaboration. CC involves an individual’s ability to recognize, assess, appreciate, and respect unique backgrounds such as race, ethnicity, sexual minorities, gender, identity, religion, and age, to make greater informed decisions in healthcare and minimize inequities. Within educational programs, both constructs can occur simultaneously to optimize learning and patient-centered outcomes.Objective: To identify the impact of a Diversity, Equity, and Inclusion IPE single-day event on the perceptions of interprofessional practice and ability to provide culturally competent care instudents enrolled in Doctor of Osteopathy (DO), Pharmacy, and Athletic Training (AT) education programs.Approach: An experimental design used pre- and post-test measures of IPE and CC knowledge with a one day conference as the intervention. Participants included students (205- pre and 200- post) enrolled in DO, pharmacy, and AT programs at two Midwestern universities. Participants completed the Interprofessional Collaborative Competences Attainments Survey (ICCAS) and three modified components of the Tool for Assessing Cultural Competence Training (mTACCT) before and after the event that included baseline information about the different professions, three CC presentations, and two case studies with small group discussions. Due to uneven sample sizes in the pre- and post-test, and violations of normality and homogeneity of variance, Kruskal Wallis tests were used to assess differences in the intervention.Results: Five items on the ICCAS and all items on the mTACCT demonstrated statistical significance. On the ICCAS, students demonstrated increases in their ability to; “actively list to Interprofessional (IP) team members’ ideas and concerns”, “working effectively with IP members to enhance care", “recognizing how others’ skills and knowledge complement and overlap with their own”, “to develop an effective care plan with IP team members”, and “negotiate responsibilities with overlapping scopes of practice”. This demonstrated that discussing the professions in general and utilizing case studies and small group discussions allowed students to understand the roles, skills, and responsibilities of their peer professionals which will lead to better communication and teamwork resulting in improved patient outcomes and satisfaction for both patients and staff. The results of the mTACCT demonstrated overall improvement in skills but highlighted students are consciously incompetent, where they recognize a deficiency but demonstrate a desire for greater understanding. Students felt that initially they lacked the ability to identify bias and stereotyping in healthcare but after the intervention felt better equipped. It is important to note that while we found improvements within CC, a single event should not be the only point of CC inclusion within curriculums. Our intervention provided students from three different healthcare programs with an educational opportunity to strengthen their skills in both IPE and C

    Notch2 and Notch3 Function Together to Regulate Vascular Smooth Muscle Development

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    Notch signaling has been implicated in the regulation of smooth muscle differentiation, but the precise role of Notch receptors is ill defined. Although Notch3 receptor expression is high in smooth muscle, Notch3 mutant mice are viable and display only mild defects in vascular patterning and smooth muscle differentiation. Notch2 is also expressed in smooth muscle and Notch2 mutant mice show cardiovascular abnormalities indicative of smooth muscle defects. Together, these findings infer that Notch2 and Notch3 act together to govern vascular development and smooth muscle differentiation. To address this hypothesis, we characterized the phenotype of mice with a combined deficiency in Notch2 and Notch3. Our results show that when Notch2 and Notch3 genes are simultaneously disrupted, mice die in utero at mid-gestation due to severe vascular abnormalities. Assembly of the vascular network occurs normally as assessed by Pecam1 expression, however smooth muscle cells surrounding the vessels are grossly deficient leading to vascular collapse. In vitro analysis show that both Notch2 and Notch3 robustly activate smooth muscle differentiation genes, and Notch3, but not Notch2 is a target of Notch signaling. These data highlight the combined actions of the Notch receptors in the regulation of vascular development, and suggest that while these receptors exhibit compensatory roles in smooth muscle, their functions are not entirely overlapping

    Protocol of a Randomized Controlled Trial of Culturally Sensitive Interventions to Improve African Americans' and Non-African Americans' Early, Shared, and Informed Consideration of Live Kidney Transplantation: The talking about Live Kidney Donation (TALK) study

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    <p>Abstract</p> <p>Background</p> <p>Live kidney transplantation (LKT) is underutilized, particularly among ethnic/racial minorities. The effectiveness of culturally sensitive educational and behavioral interventions to encourage patients' early, shared (with family and health care providers) and informed consideration of LKT and ameliorate disparities in consideration of LKT is unknown.</p> <p>Methods/Design</p> <p>We report the protocol of the Talking About Live Kidney Donation (TALK) Study, a two-phase study utilizing qualitative and quantitative research methods to design and test culturally sensitive interventions to improve patients' shared and informed consideration of LKT. Study Phase 1 involved the evidence-based development of culturally sensitive written and audiovisual educational materials as well as a social worker intervention to encourage patients' engagement in shared and informed consideration of LKT. In Study Phase 2, we are currently conducting a randomized controlled trial in which participants with progressing chronic kidney disease receive: 1) usual care by their nephrologists, 2) usual care plus the educational materials, or 3) usual care plus the educational materials and the social worker intervention. The primary outcome of the randomized controlled trial will include patients' self-reported rates of consideration of LKT (including family discussions of LKT, patient-physician discussions of LKT, and identification of an LKT donor). We will also assess differences in rates of consideration of LKT among African Americans and non-African Americans.</p> <p>Discussion</p> <p>The TALK Study rigorously developed and is currently testing the effectiveness of culturally sensitive interventions to improve patients' and families' consideration of LKT. Results from TALK will provide needed evidence on ways to enhance consideration of this optimal treatment for patients with end stage renal disease.</p> <p>Trial Registration</p> <p>ClinicalTrials.gov number, <a href="http://www.clinicaltrials.gov/ct2/show/NCT00932334">NCT00932334</a></p
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